Back in October 2013, when we asked women who had been diagnosed with breast cancer to tell us the collateral damage of their treatment, boy did you respond! That crowdsourcing project confirmed what has often remained unspoken in the breast cancer community: that many of you are suffering from consequences of your treatment. Now we have taken this work to the next level—the first phase of formal data gathering–with the Quality of Life Questionnaire launched through the Health of Women (HOW) Study™. This questionnaire was created to identify and measure the quality of life among everyone, with and without a history of breast cancer, so we can distinguish which issues come from the treatment and which are related to normal aging. We also will use data from the previous questionnaires to look at correlations between other health conditions, family histories, and health habits and side effects from treatments. For example, do women who have restless leg disease also get more neuropathy from chemotherapy? These kinds of questions are not normally asked in clinical trials that require a pure population and therefore, this data is not known. This is important research for all women and men! The Quality of Life questionnaire was released in October and we’d like to thank everyone who has participated thus far. We encourage all of you that have it on your “to-do” list to get to work! You do not have to have completed the previous questionnaires to fill out the Quality of Life questionnaire, but it will help with our analysis if you have. We are excited to share some of the early results with you. As of late November, we received responses from 8,712 (HOW) participants, of whom 2,856 (33%) have a history of breast cancer. The most commonly reported symptoms among all individuals with a breast cancer diagnosis were: hot flashes (51%), problems sleeping (49%), and vaginal dryness (47%). Among those with hot flashes, 66% felt this was related to their breast cancer treatment. Thirty-eight percent of those of you with a problem sleeping expressed a relationship with treatment. Not surprisingly, 52% of you complaining of vaginal dryness related it to treatment for breast cancer. Among individuals with no history of breast cancer, the top 3 reported quality of life issues were: 1) problems sleeping (34%), 2) feeling low or depressed (31%), and 3) headaches (27%). It’s interesting that problems sleeping are common to both groups, but may become exacerbated following breast cancer treatment. We also note that those women and men with a breast cancer diagnosis did not report depression among the most common problems. This can be interpreted in a number of ways including that physical problems may be more prominent or even that you are happy to be alive! Chemo brain, as measured by concentration and memory in this questionnaire, are also main concerns among those treated for breast cancer. Thirty-two percent of survivors report problems with concentration, of which 71% say it is related to their treatment. Memory problems were reported by 41%, with 67% of those reporting an association with breast cancer treatment. We are very interested in communication with health care providers and how it affects the quality of life. The statement “I find that doctors don’t explain what to expect” resulted in 18% of survivors agreeing “quite a bit” or “very much” to the statement. Communication between patients and their doctors is one of the areas that has been consistently highlighted as an issue in dealing with breast cancer. We plan to use the formal Quality of Life survey results to help find better ways to prepare patients for the long-term effects of cancer treatments. The overall quality of life was not observed to be vastly different between those with and without a history of breast cancer. Among individuals with no history of breast cancer, 45% reported an excellent overall quality of life, compared to 36% of those with a history. After hearing about all the collateral damage caused by the treatments from breast cancer in the crowdsourcing project, it is promising that 85% of breast cancer patients reported a good or excellent quality of life. It appears that despite the physical limitations due to the disease, survivors feel grateful to be alive and focus more on the positive aspects of their life. We will continue to analyze results and periodically report on some of the findings from the Quality of Life Questionnaire as more data become available. If you haven’t done so already, please consider taking the questionnaire to improve our understanding of the collateral damage of breast cancer treatment. And tell your friends with and without a breast cancer diagnosis to participate. The more data we can collect, the more accurate the research will be. To join the Quality of Life project, log-in or register for the Health of Women Study at: https://www.healthofwomenstudy.org/
